In november 2017 I got a gastroscopy that showed there was a strange mass/tumor on my esophagus, between the trachea and my heart. I have had increasing pain in this area for several years but my GP kept telling me it was heartburn, so I took heartburn medication for a few years. Late 2017 the pain got unbearable and I only was able to swallow liquid food. Afterwards I had the gastroscopy.
I got referred to have some others tests and scans to find out what that thing was. After the first PET-scan they discovered that my lymph nodes where very visible. At first they thought it was cancer, luckily after a few more test and the removal of a small lymph node in my neck, they discovered it was a disease called sarcoidosis. Which is characterized by small collections of inflammatory cells in different parts of the body, in my case especially in my lungs.
Then in June 2018 the tumor on my esophagus got removed. The surgery went well and I thought everything would get back to normal. The first weeks after my surgery I could still only eat liquid or soft foods because the wound on the inside had to heal. When I could start eating normal foods again, I discovered I had some weird new symptoms. I could only eat very little, never felt hungry, felt full after a few bites, was nauseous very often and had a lot of abdominal pains. After a lot of doctor visits, tests and medications they found out I had gastroparesis. Probably because of the tumor removal surgery. I had lost so much weight (more than 10kg) so I was glad I got a feeding tube placed to get my food in.
The time in between the gastroscopy in 2017 and the operation in 2018 I also developed other symptoms like muscular-, joint- and nerve pain. At first everything was devoted to the sarcoidosis, a few years later it seemed I developed fibromyalgia due to the excessive amount of stress my body had to endure.
I also had some other diagnoses over the years like dysautonomia, PCOS and IBD. All those things combined was and still is a big impact on my life, I wasn’t able to do my work so I had to quit, I have lost friends but gained even more and discovered a online world of fellow spoonies, I picked up some old hobbies and even find some new ones!
Hi! My name is Alex (or Al), I’m 19, and I use he/him pronouns. I have been fighting against progressive, chronic,...